Venting about Fibro and CFS

[YankeeCandle224]

I mentioned on a couple other posts how badly I am hurting lately and how tired I am.

I have so many illnesses, syndromes, diseases, I cant remember half of them when I try to explain to someone, and I'm not exaggerating.

But, the fibro and cfs are by far the worst for me right now, I know I am in a flare as no pain meds help except for being bad and taking extra, and I cant do that but maybe twice a month as I'll run out of pills. I do tell my doctor, and thats when he adjusts my meds so I dont have to'cheat'. I am very honest with my pain doctor and think I am going to start accupuncture next month.

Has anyone got fibro and cfs so bad, along with the IC that you can barely move? I hate all the fibro boards I've been on lately, too much catiness, fighting, etc, and am hoping I can find someone on here that can relate.

I also have hypothyroidism and am waiting on the latest blood test results, crohns disease, degenerative disc disease, IBS, high bp controlled right now with meds, and I JUST TURNED 40!!! And I forgot to mention severe GERD with ulcers from esophagus to rectum.......some from the crohns, some from the GERD.

I'm so weary....I should be so happy, we just bought our dream home and move in after closing next month, but I cant get myself moving. i have tons to do here, and cant do it, I just cant.

I need to make my husband understand and while he will tell me to pace myself, do a little here and a little there and that he doesnt expect me to do everything in one day, I feel guilty if things arent finished.

Anyone out there like me? I'm trying not to have a pity party here, just want to get out of this funk and this flare before I lose my mind from all the stress........

Hugs, Sandy

ps. See, I forgot to add IC in that long list!

[ICNDonna]

I'm a chronic list maker. I make lists for everything --- that way I can pace myself so I'm not totally exhausted every day. And if I'm not feeling well, I allow myself to sit back and relax a bit.

You've been under a lot of stress recently and it's not going to really calm down until you are all moved and settled in, but you may need to schedule yourself some quiet time when all you will do is to watch a movie or favorite TV program, read a book, or just take a warm bath to relax. Believe me, it can help.

Warm hugs,
Donna

[Zookeeper]

Hello Sandy,
Sounds like me a little.LOL
Do you go to PT for help with the fibro?

Have you ever tried using Thera Cane for deep pressure message?I have the cane and it realy helps me when my fibro gets bad.

I have had a lot of help from the Sister Kenny Sports & Phsical Therapy Center/ Fibro specialist in my area.They have been a life saver for me.
I know that a lot of fibro paitients don't get much help and I think that is not fair.
I'm sure you have been to a lot of sites for some help.
Here is another site you might want to check out.They have some suggestions that may be helpful.
http://www.drlowe.com/

I hope your moving day goes smoothly.Please don't push your self you will only pay for it later.
I know how hard it is to pace your self with every thing.
Maybe you should set a timer when you are packing if you hurt more before the timer goes off stop for awhile.

Please take care. Love, Zookeeper Kim

[skershner3]

I have Chronic Epstein Barr Virus, IC and a number of other illnesses/diseases that you mentioned. I too suffer from the chronic pain and fatigue. The CEBV with any activity makes especially my elbows and knees feel like they are on fire. The fatigue, it doesnt make any difference if I get 20 hours of sleep, I feel no different when I get up in the morning. By the way, I would love to have 20 hours of sleep. Anyway, I drag. The hardest thing that I have found is pacing myself because if I have a day when I feel half way descent I over do it and then pay for it and end up flat on my back in bed so I have to try to do a little and then rest and do a little and then rest. You are lucky that you have a husband that undestands. When I first was diagnosed with CEBV I took antioxidants andQ enzyme Q10 or something like that, I cant remember now,which also oxidizes the blood but I am not sure with IC if I can take these now. I havent tried with the IC, as you know there are alot of supplements that you can not take but at the time they did help. You might check and see if Beta Caratene, Vitamin E, and we know that Vitamin C is off the list and the Q10 (I think it was) is on the list of things you can take. They really helped me at the time, but like I said, I didnt have IC then. Pacing yourself and trying to get plenty of sleep and keeping stress levels down are all good advise but hard to do I know. I have been there. The best of luck to you. Just dont try to over do on days when you feel good because you end up pay for it for days afterwards as you already know. Susan PS. I think I posted to your other replay on another board about this. Hope there wasnt anything there that offended you.

[YankeeCandle224]

Thanks Donna, I know I need to write more lists, and I do, but ya know what? I FORGET where I put the lists, its ridiculous. I lost my watch, my expensive Seiko waterproof watch to the "thing fairy" in my house that takes things just to make me feel nutty. I can put my list in the same place, or on the refrigerator, and I will STILL forget. I dont know why. I wish I did. Thank you for the post, and the motivation to try and get more organized in the midst of the chaos here.

Zookeeper--I used to go to PT religiously, 2 x or 3 x a week minimum. I loved it and felt I was making progress til I couldnt afford the copays. I could probably go back now that I am living with hubby, but times are still tight paying for the house and moving expenses. PT is a luxury to me, as will be the accupuncture I want to try soon from my great pain doc. Thanks for the post, I'm going to check it out in a little bit. I love coming here because I learn so much and meet the greatest people!

skershner3, you didnt offend me, not that I know of anyway lol. Another board? PM me and we can talk about which board, I'd love to know if you have me confused with someone else or if I do know you from another place. I used to take several supplements, but they got too expensive, with very little success. I know everyone is different and we all react differently to meds and supplements. I meant to ask for B12 injections at my family doctor the other day for my memory and cognitive function, but ya know what? I FORGOT!! The exact reason I wanted the shots. I had taken oral B12 but it didnt do much. I definately know where you're coming from with the fatigue. I slept 12 hours last night and got up feeling like I had slept 2 or 3. 20 would be wonderful. I love my bed, and its like my haven, about the only place I feel comfortable and dont hurt as much, ya know?

Thanks to all of you for writing. Its nice to know there are others out there on this board that understand fibro/cfs.....not good that others here have these illnesses, but good to know I'm not alone.

Love, Sandy

[Mimi-in-Chicagoland]

You need a PALM PILOT!!! Keep all your lists and stuff in it! :D Its harder to lose a palm pilot than it is a piece of paper. You can also get a case for it that could become your wallet. I have one because since my stroke I sometimes blank out on phone numbers...and don't get me started on grocery lists. :rolleyes:

Pacing yourself is key. I remember my moves...they are murder. Take a break when you need it. :kiss:

[skershner3]

Sandy,
It was my misunderstanding (IC/sleep deprivation/CFS/confused mind). You mentioned being on fibro boards and posting and there being alot of fighting, etc. and for some reason I was thinking that it was from posting somewhere else on the IC boards and I had posted replies to your posts....anyway, I think you get the idea. B12 shot, that is an idea, I used to get them weekly so I need to start them again. I actually thought that the supplements helped me but it might have been that "placebo effect" who knows. I just know that there isnt anything about IC/CEBV/CFS or anything that either one of us has that is fun and it pretty much sucks. Winter hanging on here in WV isnt helping much either. Here it is SPRING, Daylight Savings Time, April 4th and pouring the snow, I mean pouring, supposed to be lows of 19 tonight. I want SPRING! I think that in itself would make me feel better, just to sit outside and run my fingers through some dirt and feel some sun on my face. Thank everyone for being here when I need you. Susan

[1tuffcookie]

I can totally relate! I have fibro, IC, acid reflux, allergies, migraines, osteoporosis, and probably more I've forgotten. And, like you, I'm not that old: 36. We just bought our first dream house last summer. I remember feeling guilty if I didn't do much unpacking, even though my husband is really understanding. I guess we're our own harshest critics. During a flare, this is how I feel: "I try to take one day at a time, but sometimes several days attack me at once." (Jennifer Unlimited)

I just wanted to remind you that you're not alone.
--Andrea

[Katrina]

:grouphug::grouphug::grouphug:

Best Wishes :cat: